Friday, August 21, 2009

It didn't happen to me

We're off to Hersheypark, so I have a guest poster today: Dianne from Nothing But Everything. She lives in Australia, but I think we were separated at birth—we both have a very similar take on life. I'll post photos from Hershey and start telling you all about the stem cell therapy (we go to Duke on Sunday) over the weekend!

Since my son, BC, was diagnosed with CP, I have joined several online support groups for other parents of kids with disabilities. That, along with the blogging mums I have met (including Ellen, of course) has been one of the best forms of support I’ve had along the way. It’s often made me wonder how difficult it must have been for mums in our situation to find support before the Internet.

I generally find these groups to be incredibly supportive and informative, with the rare exception.

Way back when we were first starting out on our journey, I joined a support group on a website that covered a range of disabilities. A mother wrote a message to the group expressing her sadness at her child’s disability and her inability to cope.

She received a very, very irate response, not from another parent but from an adult with CP.

There was a fair bit of anger in the response, which did a lot to suggest that mothers of kids with a disability had no real right to make out that they were so hard done by. And the main thrust of the argument was this: This didn’t happen to you. It happened to your child. Get over it.

At the time I was really hurt and upset by the post. So much so that I left the group. I didn’t want to be part of a group where people wouldn’t support each other.

I’ve thought about that post a lot over the past four years with a range of mixed emotions. I can definitely see where the poster was coming from. It’s true. And it can be very good to remember that I definitely shouldn’t be sad for my son because he, in fact. is not sad at all. He’s very happy.

Mostly though, I think the poster missed the main point. It is a huge responsibility being a parent of a child with a disability.

There are days when I am exhausted by the things we are doing therapy wise or feel guilty about keeping him so busy with all the things we are doing but at the same time even more guilty about the things we COULD be doing, but aren’t. Then there’s the guilt about the time I don’t have to spend with my other son. And there’s always that concern about the future. What will it hold for my son? How best can I prepare him for it? Am I doing enough to help him become an independent, happy adult?

While most days I am mostly content to focus on how amazing, funny, clever, resilient and strong my son is, there are days that the overwhelming responsibility of it all does get me down, because even though his brain injury didn’t happen to me, he is my son, I love him and I want the very best for him. Both now and for the rest of his life.

Again and again I am grateful to stop in for a visit here. So much truth in this and a really helpful POV to take to heart. Thanks for putting it so poetically Dianne -- I couldn't agree more with every word said here today.

Let me explain: Since my son, Elijah's birth, I've been annoyed with my parents at times. They'll express their sadness over my son's disablities...and all I can think is, "but this isn't YOUR life. YOU had three healthy kids. This didn't happen to YOU." It's like my heart couldn't hold more pain; I haven't wanted to admit that it's hard for them too. And then I realized this (epiphany!): I was (silently) thinking of my parents like the irrate poster you mentioned. I wouldn't want Elijah to look at me that way and I shouldn't look at my parents that way either. I think I've always known this, but you've put me on the road of being more thoughtful and understanding of their feelings. Thanks for that.

I hurt because my boy struggles and they hurt because I hurt (and because he struggles). When you love someone, especially your child, their struggles ARE your struggles. No, it didn't happen to me and it didn't happen to them, but we all hurt because it did happen to our loved little boy - so in a way, it happened to all of us.

That's EXACTLY how most parents feel. They don't just want the generic "happiness" for their babies, they also want their kid to be able to do ANYTHING, to not have limits, to "fit in" as they grow up, and mostly, they don't want their child to be teased at school (and we know that happens, don't we? Who went through school and didn't see that kind of teasing?).

There are a few reasons I'm not "more sad" than I might have been. First is my oldest boy, who was adopted fairly young with a learning disability we knew about (he's a cousin of his baby brother, long story). So we had experience with an exceptional kid. Then, when I had my little surprise, he wasn't diagnosed straight away, so we had an opportunity to kind of slide into his reality. Then, we got hit by a family tragedy (my husband passed) and I just didn't have time for a pity party, I was too focused on not having to go on welfare (thank God for my parents).

We''ve come out of all that OK, and I'm getting by with a lot of emotional (and babysitting) support from my folks, but there are days when I do wonder "What if." I'd be lying if I didn't admit that.

What a wonderful post! Thank you so much for sharing.I agree with the adult with CP to a point. My son Daniel (hemiparesis due to a stroke) is generally one of the happiest kids I've ever met. He doesn't spend his life moping and feeling sorry for himself, so why should I?On the flip side, I wholeheartedly agree with you. The poster missed the point, which I think happens a lot when it comes to people who don't have a child with a disability. My son may be a generally happy kid, but it's not all sunshine and rainbows. He gets frustrated when it's difficult for him to do something that his friends are doing. He came home from preschool one day sobbing to the point that his whole body was shaking because an adult who worked at the school was mistreating him and made him feel, in his words, "stupid." When those things happen, my heart just breaks for him. It is NOT just the person with the disability who goes through the pain of it.As you said, being the mother of a child with a disability isn't easy. It's as difficult as it is rewarding, at least in my case. Other people usually have no idea how hard it is at times. In short, no the stroke did not happen to me. It happened to someone who is very much a part of me, which means that I will hurt when I see him in pain.

Very well said! This post really speaks to my heart and says exactly what I was feeling just yesterday. I was watching my daughter have a really hard time at a PT appointment and it really got me down. It made me so sad that she has to work so hard for everything.

I want her to just be able to be a kid - to play with her toys and laugh with friends without a care in the world. And there is time for that, but that time seems to pale in comparison to the amount of time she spends working hard. That breaks my heart.

I want her to be able to do things that seem to come so easily to other kids. She doesn't know any different so she isn't sad about this. She is the most content, happy toddler you could ever meet. As her mom, I think I will always have days when I am just sad about the struggles, the work, and all that she has to overcome. They may get less and less as she gets older, but they will come. That is what happens when you love someone with all your heart!

Oh, but it DID happen to you, when it happened to you. All of this and more. Parenting a child with disabilities involves constant vigilance, self-education, advocacy, second-guessing... it's a very, very, very full plate. And it happened to you, in you own way, just as, when he is older, your son will realized it happened to him.

I understand completely what you're saying. I am not a parent with cerebral palsy, but I am the one with cerebral palsy. Also, none of my friends have it (just a coincidence), but they treat me like anyone else they know. However they listen to my struggles and are empathetic at all times. They also pick me up when I fall and make me laugh to help me feel better as I often feel embarrassed as a result. We walk "hand in hand" through life sharing where we can and educating one another on what the other doesn't know. But we all accept each other for whom we are on the "inside." I wish only the best for you and your family. I am 33 now and my childhood was rough with being made fun of and all. As an adult it's not so bad as it's not so often. But when it does happen, being made fun of does bother me a little. I just remember "those who mind don't matter."

If i had to guess (dangerous), i would think that the adult with CP is hurt. To read a parent's innermost feelings about raising a child with disability might make them feel less valuable and wonderful.

I absolutely, positively do think that there a fine line between what happens to us and what happens to our children. Realistically, although the job is hard, we still get to CHOOSE how much of ourselves we put into it. Many many of the parents on the net are CHOOSING to do it all and that is laudable. Our children, however, have no choice. They have had a situation thrust upon them. In my opinion, coping has little do with a child's limitations--we love our chldren dearly. It has so much more to do with role we choose to take. Sitting there and realizing that you have a CHOICE to be an asset to your child or a lead weight is scary as hell. And that's nothing something you can understand until it happens to you.

Thanks everyone for your lovely comments and thanks to Ellen for allowing me to be a guest poster - and for her lovely intro. I feel the same way!

There's something in every comment here that had me nodding in agreement. Some very beautiful poignant words here.

Thanks for sharing your perspective Sara! I love your final words "those who mind, don't matter". I would love that to be my son's motto in life, for sure.

And Katy, you're very very right about the difference in 'choice'. I totally agree with you! I hope I made it clear enough in my post that I wasn't at all suggesting it was the SAME thing caring for someone with a disability as it was having a disability.